Battling ALS: Becoming a Guinea pig for Radicava clinical study

Radicava is a new drug that won't cure ALS but it might slow its progression. I am a Guinea pig hoping to get the drug, not the sugar water.

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CHARLOTTE, NC, May 22, 2017 – The ALS learning curve added another piece to the arc this week as I began Phase 1 of a clinical study that will run for the next seven months. That is to say, I am now officially a Guinea pig.

Fortunately, the most difficult aspect of the program was completed during Week 1, but that does not mean the remaining stages will be any more pleasant. It only means there will be less of them and, best of all, the time of each session should be shorter.

Appointments began at 9 am, or at least that was when they were scheduled to start. For some odd reason, and one which I should have asked about, the infusion package was not on hand when we arrived, so there was always a 45 minute to one hour wait before the medicine got there.


Testing a new ALS drug, Radicava, the learning curve continues



During that time, they checked my weight, temperature, pulse, blood pressure and gave me respiration exercises. When the juice finally reached the treatment center, it was time to play hide and seek with my less than enthused veins which have now become keenly aware of what the word “needle” means.

The first three days of the program were like a treasure hunt to locate a vein that would cooperate with the infusion. Neither arm wanted to play the game so the nurses resorted to the old “hit and miss” method using my hands and arms as pin cushions. I was beginning to think I should call this particular ALS treatment the “human pokie-man” process.

I was beginning to think I should call this particular ALS treatment the “human pokie-man” process.

When things finally settled down, the torturous drip-drip of either good stuff or placebo drained its way into my body for an hour. My method of dealing with that was to attempt to sleep but that didn’t work well because I later found myself answering, even more, questions about my sleep habits, why I was so tired and on and on.

Once the infusion was over, Stage 2 consisted of sitting quietly for two hours to make certain everything was all right. It was much like waiting a half hour after you ate when you were a kid before going swimming.

Two hours a day doing nothing for five straight days, however, is a killer.

Each day ended with more blood pressure, temperature and pulse checks before being officially discharged. Everyone was extremely friendly and compassionate about the process. The process, on the other hand, was like waterboarding for the infirmed.


Battling ALS with an electric wheelchair and retropulsion


What remains ahead in coming months is a series of three infusions one week per month for the next six months. So with 18 little hunt and peck sessions to look forward to I can only hope that I am getting something that might help in the future and not the sugar water.

For the most part, one day seems pretty much like the other. Dropping things has become a pet peeve. No matter how hard I try, there is just no way to avoid spilling pills, or food, or papers or anything else that can be affected by the law of gravity.

The biggest change recently has been the inability to hold up my head. It is easier to just look down at the ground even though I am keenly aware that I am not looking at the person to whom I am talking. If I sit, I am able to lean back and look up, but from a standing position, my head feels like a bowling ball with ears.

Amber the gadget lady gave me a neck brace several weeks ago, which I wore for a while, but it is so uncomfortable that I have running debates with myself as to whether I want to struggle with the brace or just keep my eyes focused on the ground.

Most of the time, when I am just sitting and relaxing or watching television, life almost seems as it once was, or is for normal people. That’s when I have a tendency to forget that I can no longer do certain simple tasks, and if too many dropping or spilling incidents occur in a short period of time, frustration becomes a major emotion.

It is truly amazing how many different places eating utensils can go if you do not have the ability to keep them in check. Put a knife with butter on it on the side of a plate and if you pull your arm back too quickly it will either spin and wind up in your lap creating a lovely little grease spot, or it will stick to your hand forcing you to wash your hands or be immersed in butter and/or jelly up to your elbows.

Each week continues to be a new adventure, but for now, when it comes to the ALS study, I suppose I will go ahead and “stick it out.”

Bob Taylor has been traveling the world for more than 30 years as a writer and award winning television producer focusing on international events, people and cultures around the globe.

Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)

Read more of What in the World and Bob Taylor at Communities Digital News

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